When Epilepsy Bereaved (EB) started to make an impact upon the epilepsy world Brainwave was trying to come to terms with the deaths of several students from its training programme who had died in similar circumstances. EB brought the answer to the question of how they had died and this knowledge energised the organisation into action on SUDEP. This knowledge and suggested action plan were not universally accepted throughout the organisation and the first battle was to gain acceptance of the need for action. The first steps decided on were as follows:

• A major article on SUDEP in Epilepsy News (Brainwave’s newsletter)
• Dissemination of the facts about SUDEP to Brainwave’s students
• Advocating the use of safety pillows for all people with epilepsy
• Training for all staff in providing information on SUDEP and supporting bereaved families
• Building up of a database of bereaved families

Publishing the SUDEP article proved a seminal point in the development of Brainwave’s initial strategy. Many members responded to it in varying ways, many of them negative and angry, despite great care having been taken writing the article. Nonetheless, it opened the debate on epilepsy death, providing the platform to put the other steps in place.

In May 1999, Brainwave got direct access to the Minister for Health for the first time and SUDEP was one of only four topics raised with him. It was next decided to hold a cross-border seminar on epilepsy deaths, combining with Epilepsy Bereaved and Epilepsy Action, Northern Ireland. The meeting was a success drawing families from all over Ireland. However, the Brainwave staff found it hugely draining emotionally.

In 2000 a meeting was held in Dublin for Brainwave bereaved families. This was a successful but small meeting. By this time, the JEC was at an advanced stage of preparations for the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002) in the UK with Epilepsy Bereaved leading the project for the JEC. The publication of the audit, in time for National Epilepsy Week (NEW) in May 2002, brought the issue of SUDEP and other epilepsy deaths to major prominence in the UK. Brainwave made SUDEP the focus of NEW with events held all around the country. Additional training in SUDEP information, advice, and support was arranged for the charity’s staff prior to NEW. In Dublin, the major event was a special ‘Call to Action’ (on epilepsy deaths) press event. A number of prominent politicians and a good gathering of press ensured some very good publicity. The keynote speaker at this event was a young Irish neurologist working in the UK, Dr Yvonne Langan, who has done some groundbreaking research into SUDEP.

The audit findings, particularly those in relation to information for families, seizure control, and access to specialist, care led to Brainwave refining its strategy in relation to the whole area of epilepsy deaths. The following additional aims were added to the strategy:

• To step up the campaign to increase the numbers of neurologists and neurophysiologists in Ireland
• To have a major Irish research project similar to the audit
• To campaign for Community Epilepsy Specialist Nurses
• To inform key professionals such as GPs and Teachers about SUDEP

Brainwave has had success in all these areas but they are all works in progress. Earlier this year another cross border SUDEP seminar was held and now Brainwave has decided to consider regional meetings. In addition, the concept of joint working with our two partners in the cross border events is being explored.

Since Brainwave first took action on SUDEP prevention, one further death (one too many) of a student attending our courses has taken place in the past six years. This compares very favourably to the earlier experiences but does not make us complacent and, until a cause and cure for SUDEP is found, demands our on-going attention.

Mike Glynn, CEO, Brainwave
Ireland

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.